Abstract

Background: There is a growing focus on a positive autistic identity; however, we know very little about self-defined autistic self-concept beyond what it means to be ‘autistic’.

Methods: We conducted semi-structured interviews (written or spoken) with 103 people; 51 were autistic, 10 were neurodivergent but not autistic, and 42 were neurotypical. We asked them questions about their identity and self-concept. We also invited them to submit an artefact (e.g. a photograph, or a drawing) that they felt represented who they were. We analysed the data using inductive reflexive thematic analysis, based on semantic and latent content.

Results: We developed three themes. In theme 1) “The idea of the self might be one of those neurotypical things”, autistic participants suggested that the self was hard to define and might be a neurotypical construct. However, the non-autistic participants also found the self difficult to define. Overall, participants across groups believed the self was multi-faceted and context dependent. Theme 2) It made me who I am, highlighted factors at different levels of a person’s social ecology (e.g. their development, their wider family and friends, and society) that impact the development of self-concept. Autistic and neurodivergent people experienced increased social stigma that impacted their ability to know and express themselves. Theme 3) Unapologetically me, showed that autistic people developing comfort was prevented by perceived social power dynamics and consequences of not following social norms. Autistic people highlighted the importance of embodied experience in their own authentic expression; being able to stim freely was a core part of who they were.

Conclusion: Our findings suggest that rather than seeing the autistic self as impaired compared to non-autistic peers, we might recognise that it can be difficult to describe due to the influence of external neuronormative expectations and external power structures that prevent self-knowledge.